An emotional hand grenade with the pin pulled out

I’ve had to deal with the aftermath of three major emotional explosions in my life. All three involved a period of deep mourning for the loss of who I perceived I was and eventual reconciliation with myself. It turns out the explosions took away a perception I had of myself that wasn’t really part of me; like a sculptor who creates by chipping the marble away.

The first explosion occurred when I was 16 and in the final year of secondary school. I had been going to speech therapy throughout my childhood in the hope I would get rid of my stammer. I had unwavering faith in this. I had to get rid of my stammer so I could cope with being an adult, or so I thought. I constantly asked myself, "How could anyone function as a grown up with a severe stammer?" Also, I heard that it was easier for a child to get rid of their stammer and much harder for an adult. Therefore, I had to catch the last boat to Fluent-ville and I was already running late.

I attended speech therapy as usual one day when my speech therapist handed me an emotional hand grenade with the pin pulled out. She told me "I am going to pass you on to a therapist who deals with adults who stammer".

I thought, "Sorry, what did you just say?" I said, "Sssssssssssssss..." and stammered, both verbally and emotionally.

And that's when the hand grenade went off. I was dragged into adulthood before my time and in the process lost hope and lost my perceived fluent future. I simply wasn't ready to be called an adult nor was I ready for the realization that I would have to live the rest of my life with a stammer. I felt I had failed myself in the worst possible way. I had failed to give myself the means to be myself.

I saw myself as horribly disfigured from that explosion and the ringing in my ears deafened me to my voice for years. It took 12 years of emotional turmoil to come to terms with being an “adult who stammers”.

The second hand grenade I had to deal with was my depression and nervous breakdown. The explosion blow away my flesh so I was just a skeleton; it drove away everything except my bare bones. I had to layer each muscle back onto my skeleton and repair each nerve fibre and tendon. I had to rebuild my emotional wellbeing one cell at a time. It took two years.

The third hand grenade that was handed to me was Parkinson’s disease, “You might have Parkinson’s disease”, my disease said and dangled the pin from the hand grenade in front of me. The wait was agonising to find out whether the hand grenade would explode or not. It eventually did and separated my mind from my body and catapulted me into the clutches of a prognosis which tries to dictate to me, “you will be severely disabled”. I’ve been trying to glue my mind and my body back together ever since.

Ultimately, the three explosions have enabled me to know how determined and resilient I can be in my life. The aftermath has helped me to refine how I see myself and become a lot more realistic about who I am. I’ve learnt to be alongside the problems I have. Each explosion taught me something new and gave me the opportunity to learn and challenge my perception of who I am. I’ve slowly emerged from the marble…

The suffering of a Parkinson’s sufferer

Parkinson's disease is a slow violation of your life; an inexplicable, unstoppable, defining yet indefinite disintegration of everything you have built in your life. The suffering comes from the awareness of the violation and the lack of power to intervene. It comes from the burden of "should have done more in the past" and what I can't do now and in the future. It is knowing when the violation is over there will be nothing left of me. A life in ruins. 

Yet I can admire a ruined building and what a life leaves behind. That is my aim now: to live a life in the present to the best of my ability and ensure through the process of living something of me remains.

Losing and gaining hope

Losing hope is caused by not being able to see the possibility of your free will influencing the outcome of an event. In our random, unjust world it is a constant battle (mostly filled in by religion and science) to maintain your hope. All hope is based on the basic premise that one day we will fully understand the world and be able to be the cause of its effect on us. In the absence of hope we sink down to our knees and let the howling winds of the world shake us out of ourselves.

Therefore, we lose the connection between ourselves and the world when we lose hope. Like the arrival of Parkinson’s in your life, you see the future you expected to have being snatched away. How do we gain our hope back?

We do not lose our free will when we lose hope; we lose the perception of what our free will can do. Therefore, even when we lose hope we are free to choose our reaction to the world and in doing so colour the world according to our will. For example, losing hope I will ever share my life with someone because of my Parkinson's causes me to perceive every woman I meet as automatically not interested in me. This causes me to lose even more hope and makes me determined to give up any possibility I have to express my heart. The world continues with its perceived indifference towards me because I don’t engage with it. I need to see the possibility of the world accommodating me and allowing me to express myself within it. If, with renewed hope in the efficacy of my free will, I can create space for me it means I can create space for others to join me.

Retreat

Imagine Michelangelo’s disappointment if he stood back to admire his David and all the dust and chipped marble that he laboriously removed over months slowly began to reattach to the sculpture. David was gradually becoming covered up and drowned in the discarded marble.

Would Michelangelo give up art if he then saw his Sistine chapel fresco brush stroke by brush stroke go back to an ordinary ceiling?

This is what it feels like to see the gains you have achieved in managing your Parkinson’s symptoms be pushed back. My symptoms have worsened recently and I have retreated from where I was.

But, I won’t give up trying to sculpt or paint my life…

Being in love with a Parkinson’s sufferer????

Parkinson’s disease changes you physically; it drives its car in such a way as to continually cut you up on the motorway of your life; it causes traffic jams, accidents and under takes you while you are sat behind the wheel of your car impotent with road rage: “get the f**k out of my way!!”

This must be the same for partners, family and friends who are driving with you; the scream out of their own car windows, “we are trying to get somewhere Parkinson’s, get the f**k out of our way!!”

This is especially true when you are trying to start a relationship (in my case) or maintain a relationship. Your partner (who has potentially known you for years) or potential partner (who has expectations of what they want in a partner) will expect you to drive at a certain speed and with a certain level of skill. As they are wanting to race ahead with you, you are stuck behind the Sunday driver that is Parkinson’s. Eventually you drift apart (or never drift together) and lose sight of each other.

I think we respond to love and being wanted both emotionally and physically; we can normally reciprocate love in the same way. Because Parkinson's undermines us physically and emotionally however and at the same time increases the need to be loved (especially somebody to love our crumbling physical body) it reduces this response and reciprocation to dreadful isolation; the disease stops the normal cycle of being in love: you engage emotionally with someone, they reciprocate, then you engage physically which lays new ground for a deeper emotional connection (in an ideal world). Parkinson's dissolves this possibility both for you and your partner.

Parkinson’s makes you and your (potential) partner drive at different speeds…

The reasons why

We are obsessed with understanding why things happen; Science tries to find out why the world acts the way it does, it is the basis of religion too. Our curious nature is the wonder of the universe but it is also a terrible burden; it can lead us to seek answers where there are none.

Why do bad things happen in the world? Why do I have Parkinson’s disease? There is no reason. It just is. Our need to answer the question is a need for control in a hostile world. If we can understand why we can prevent it and make the world and ourselves safer. But sometimes the world cannot offer any answers and this leads us into logical despair; we end up praying to God who, as author of the world, is responsible for (or at least neglectful of) the evil in the world. So, we end up replacing “why is there evil in the world” with “why does God allow it” and get absolutely nowhere in answering the why.

Some people blame themselves for being “born into sin”. But such reasoning is a cry of despair. In no way did we choose to be born or choose the way we exist. What have I got to do with what supposedly happened 2000 years ago? That’s not my responsibility; that’s like saying I committed murder ten years before I was born and I should be punished for it.

We should learn to live with uncertainty and not knowing why. It just is. We can learn to do something about it by trying to understanding how the world works but filling our lives trying to understand why is trying to climb through the looking glass; instead we bang our heads and we are left looking at our reflection and wondering, “why am I here?” No reason…

Trusting myself

I have lived under the burden of self-doubt all my life. It’s as if I have worn multiple layers of clothes and it has made me feel stiflingly hot and deeply uncomfortable. Try to imagine not hearing your own voice and not identifying with your voice; try to imagine feeling you are not in control of your mind and feeling you are in a constant battle with yourself; imagine not connecting with your body and not feeling in control of it. These are the layers of stammering, depression and Parkinson’s self-doubt I have been consumed by. I reacted to self-doubt by trying to control everything and when I couldn’t control everything in the world I would add more layers of self-doubt clothing.

I have emerged from those layers during the past year: ironically since my diagnosis of Parkinson’s. I have recognised that those self-doubting layers of stammering, depression and Parkinson’s are just a part of my thrownness (or the state in which I exist). I focused on those things to the exclusion of almost everything else. I didn’t notice the person beneath those layers. I neglected myself in the all out warfare of proving myself and filling in the void of self-doubt.

I have emerged battered and bruised and severely dehydrated. I am only now learning to drink the cool, refreshing water of trust. Trusting my breath and my voice; trusting the stability of my emotions and my mind; trusting my mind to connect to my body; trusting the future and my ability to still do things; trusting the value of myself and my ability to be me.

Going for a wander and making up new recipes

I never used to go for a wander around my mind. I used to stop myself because I didn’t trust that there would be anything to find. Sad, isn’t it? It all comes from my old friend stammering; the difference I perceived between the fluent voice in my head and the dysfluent voice I heard when I spoke undermined the value of my thoughts. Because I perceived that the fluency in my head, the very nature of my thinking, was distorted and corrupted by my stammer, I didn’t trust myself to do justice to my thoughts in the expression of them.

I trusted my ability to digest and take on board knowledge, I just didn’t trust myself to carve my own path through that accumulated understanding; I could follow a recipe but I wouldn’t allow myself to make up my own recipe.

That has changed now and it is thanks to Parkinson’s. As my physical ability has suffered it has, in contrast, brought forward the ability of my mind and made me very aware of the value and privilege of having a functioning mind. That sense of value has allowed me to trust my mind. My writing is a testament to the new found joy I have of wandering around my head. Isn’t it brilliant to be able to think and not constantly judge yourself?

When I started to write this post I didn’t know where I would end up; I just had a vague notion of describing wandering around my head. I opened myself up and developed the ideas as they arose in my mind. I was making up the recipe you are reading; for me, the process of coming up with the different steps in the recipe tastes good!

Appreciation

If I died tomorrow (fear not dear reader, this writer will be writing the day after tomorrow!) I can say in all truthfulness, “I’ve had a great life”. You may say in disbelief, “But your stammer, depression and your Parkinson’s?! You don’t have children. You’ve never been married. You have been lonely, frustrated, lost!”

These things are true. But they do not dismantle my life. I love and spend time with some extraordinary people. I continue to explore the wonderful complexities of life and my place in this world. I feel privileged to inhabit my mind and to have access to the knowledge, experience and wisdom I have accumulated. I have absorbed some remarkable art, music and ideas; I enjoy the challenge and thrive on provocation and exploring different intellectual landscapes.

It is true that in death all this will fade away. But I can say, “I lived my existence to the best of my ability; I tried…” Thinking about what I will lose when I die makes me think of the extraordinary gifts and opportunities I have at this very moment (despite my problems and difficulties). Because life is robustly fragile we should live at the edge of our present and continue to learn and develop. Looking far into the distant future increases the risk of tripping over something in the present and falling off the edge of life without actually living a life.

Appreciate all that we were thrown into this world with and enjoy the process (and not just the goals) of life.

You are all stars that guide me

I am sailing on the oceans of my life in a little tug boat. Sometimes the sea is rough and the storms are raging. At other times the sea is calm and the sunshine is pleasant. At every moment you are all there as stars shining brightly next to me, illuminating and animating my life; you guide me, one step at a time, as I travel to distant shores. I thank you all for sharing your present with me and for your care...

Where does it hurt?

We have the ability to point to where it hurts in our bodies and let others know we are in pain. Such self-awareness is one the wonders of the universe!

Yet, ask me where my Parkinson's hurts and I can't point anywhere. Parkinson's is in me. It surrounds me and confines me; it seems to be everywhere. It's like I'm on stage and the lighting, sound effects and cues that determine the necessary context of the play are controlled by Parkinson's; but we are working from different scripts. Therefore, the things I do and my intentions are mismatched to the plans Parkinson's has.

Where does Parkinson's hurt? My head? My heart? I think it hurts my emotions. Before I was diagnosed I still had Parkinson's but my emotions weren't burdened by the knowledge of the prognosis. Parkinson's hurts now because if feels like I am not in control of the context of my life. Parkinson's is a burden because it impacts me emotionally. 

However, emotions can be healed by thinking. Try it. Look into the current state of your emotions. Think the opposite; do you feel different? You may not believe it (thinking doesn't change the fact I have Parkinson's) but the thing you are doing at this moment, thinking, is incredibly powerful in dealing with any emotional pain. We can change the world through changing our emotional reaction to the world. That is how we can heal the hurt of Parkinson's...

The value of having Parkinson's disease

This may sound strange but I am grateful for having Parkinson's disease. Let me explain. I have a stammer, which can cause huge emotional turmoil and difficulties with forming an identity and a stable inner and outer emotional life. Stammering can become a blinding white light, which can blot out who you are.

When Parkinson's emerged it plunged me into darkness for a while by switching off the blinding white light of my stammer. As such it enabled my eyes to readjust and see the candle light that truly illuminates who I am.

Parkinson's taught me how to see that light; that's what I am grateful for. But you don't need to have Parkinson's to gain this insight; it was just that the light generated by my stammer was so intense that it required Parkinson's darkness for me to see the candle light.

You can turn off the blinding light by acknowledging that the presence of this light is not your fault (you are not responsible for the state in which you are born). Also, there is always something left to do in this life. Within this something there is a choice. Recognising this makes it possible to see the originator of this choice (i.e. you!) and to choose to see the candle light that reveals who you are.

Losing and gaining trust in my body

Only an evil genius would create a disease like Parkinson’s.

This thing created by the evil genius has a genius for attacking the very foundation of me in a subtle, gradual way until I suddenly find myself invited to the worst surprise party ever: “Surprise! You have a chronic, incurable and progressive disease! Now, who wants cake?”

Only an evil genius would attack and dissolve the fundamental trust you have in your body. When you ordinarily think about doing something, for example getting a drink, you just get up and get a drink; you don’t think like a Parkinson’s sufferer has to, “How will I move my body to get up and get a drink?” You trust in the intimate relationship you have with your body; it normally doesn’t let you down. However, Parkinson’s makes the expectation that your body will respond to your instructions untrustworthy. Your body lets you down. This can be a devastating realisation and one you go into mourning over.

However, only an evil genius would allow his genius plan to have a flaw in it that can be taken advantage of (aren’t all evil genius's plans like that?). Parkinson’s only affects conscious movement so automatic functions of the body like breathing are unaffected. This is the flaw. I have a path back to my body and a way to reconnect the feeling with the action.

I go to a yoga class and Laura, my yoga teacher, said something today that really impacted me. She said, “Trust your breathing.” In yoga breathing is used to bring your focus to the body (so called proprioception). Breathing is essential for life and by focusing on it you feel the natural rhythm of your body. Therefore, being aware of that rhythm or moving with it (“breath in, breath out and lift your arms…”) will allow you to feel and inhabit the very foundation of your body. This is crucial for somebody like me who has lost trust in the conscious rhythm of my body. Your breath will always be there and you can access awareness of it at any time; therefore, you can trust this pathway to feel connected to your body. You can use this to build trust in other parts of your body.

Come to think of it, I will have some cake…

Acceptance III

I had been trailing him for years, but I could never catch up with him. I came close a few times but he always evaded my grasp.

Then, I caught a glimpse of him hurrying into a crowded train station. I quickly followed and was immediately swept along with the noisy crowd. Parkinson's symptoms were everywhere. I became distracted and lost sight of him. Then the diagnosis grabbed me and pulled me to the floor. As I was scrambling to my feet I realised I needed to see the crowd from the footbridge overhead if I was to find him. I made my way up the stairs and finally looked over the railing of the footbridge. The crowd was a seething mass of symptoms rushing here and there.

I thought if only the crowd would stand still I could see the movement of the one I was chasing, like a moving needle in a frozen haystack. Up on the footbridge I took the medication that was given to me and I slowly learnt to come to terms with my diagnosis by seeing that I remained intact within Parkinson’s; I could still be me.

I eventually noticed that the crowd of symptoms had gradually slowed down and were more subdued. Then, I spotted him rushing towards a shop. I called out to him; he stopped and slowly turned to face me. He looked confused but relieved. I recognised him and the crowd stopped. He was me; the part of me I had refused to accept for years. I hesitated then ran down the stairs…

See Acceptance I

http://dialoguewithdisability.blogspot.co.uk/2013/01/acceptance.html

See Acceptance II

http://dialoguewithdisability.blogspot.co.uk/2013/01/acceptance-ii.html

“O let me not be mad…”

Shakespeare, King Lear

When it comes, preserve me as I am. Let it not break me as it breaks my body. When it renders me without control, then let me not be mad. Let me think on beauty for beauty’s sake, leave me to explore and drag my moving body to places of such possibilities that the world comes to rejoice not grieve. Let me be bored by life as it can be for others, allow me to enjoy the butterfly that lands on my nose, the sound of laughter and let me feel the pain of others. Allow me the melting of chocolate, the wind in my hair, a touch on my hand and the warmth of sunshine on my face. Let me be absurd, let me be profound, let me be wrong. If this be madness, then we are all mad…

But let me not be absent; O that other madness…

Parkinson’s can also be a painkiller

Being diagnosed with Parkinson’s is like sitting down and eating a big plate of pain. It has a grainy texture that sticks to your teeth and a sour, rotten taste that sometimes makes you vomit on yourself. The pain lays heavy like concrete on your stomach and the emotional wind that erupts from you is constant and powerful.

However, the human body (which crucially includes a mind) is remarkably adaptable and can extract the beneficial from anything. For me, within my Parkinson’s is also a painkiller because it makes me confront all aspects of myself (including my stammer and depression). Parkinson’s has taught me to appreciate the deep well of determination (some might say stubbornness!) I’ve got, helped me see the benefit of having a stammer and depression (also being chronic and incurable they taught me how to cope with Parkinson’s) and how much I want to be me within my disease. I see the value of the process of living a life and dealing with change since my diagnosis. After years of pushing myself away because of my stammer, I simply want to be me now; that includes Parkinson’s but also includes my intelligence and my heart.

Parkinson’s has given me the pain but it has also given me a new perspective and a new means to appreciate and deal with life.

1. Somebody I know - The problems of stammering

The Problem - How can I possibly pull two mountains together?

My mind is a fluent, non-stammering mind. My voice is a stammering voice. When I think I do not stammer. It is only when I attempt to verbalise my thoughts does the stammer intrude.

In the past I saw myself as separated from myself; one part of me, my mind, was standing on top of a mountain surrounded by a thick covering of cloud, invisible to all but myself. The other part of me, my voice, bathed in horrible sunshine, was standing on top of another mountain miles away from the first mountain.

My mind in fluent despair saw the ideas I carefully constructed and sent to the other mountain become shredded and degraded by my stammer; each idea my mind sent across lost its essence and fell away. As a result I did not recognise my external voice as a valid representation of my mind, the distance between the mountains was too great. Therefore, I was split in two. I was fluent and I stammered at the same time. I was confused. Terribly, destructively confused. How can I have two separate voices at the same time?

I lost myself in the gap between the mountains. This led to a very painful circular argument; my fluent internal voice undermined my external stammering voice and my external stammering voice undermined my internal fluent voice. So, whenever I tried to locate my identity either internally or externally it was undermined by the other contradictory voice. I ended up being nowhere. I couldn’t form a stable identity as I oscillated between my separate voices. It was very disorientating and very painful.

Because the emotional response I had to my stammer was so much more intense than my reaction to my internal voice I kept reacting to my stammer and eventually all I heard was the explosions of stammering blocks. I pushed myself towards the inside edge of my face and I existed very near the surface of my speech. I lost my inner identity and literally became my speech problem. All I heard of myself was my stammer.

My stammer had other consequences too. I felt that it was seemingly beyond the control of my mind (I never knew when I would step on a stammering landmine or how to bandage the wound when I did) and therefore every time I stammered it dismantled the value of my intelligence and my mind. I also felt alone in my head because I perceived that nothing of me (e.g. my thoughts, my consciousness) was getting through my stammer. I felt cut off and isolated; only my stammer was being seen and heard. Even when I was talking (no, stammering) with someone I felt isolated. Therefore, my “natural” state was to be alone with my thoughts.

Allied to thoughts of isolation was the fact I blamed myself for my stammer; it seemed logical to me that whatever came out of my mouth belonged to me. If I insult you then I would have to take responsibility for engaging and moving my mouth to form the insulting words. It was also my mouth that formed the stammer. Therefore, I was responsible for my stammer. If I was to blame I must truly hate myself to inflict such pain on myself. I concluded I deserved the punishment of loneliness for being unable to conquer my stammer. Why would anybody want somebody like me who was incapable of saying mere words (any infant spoke better than me)? I perceived myself as simply not being good enough to overcome my stammer. I couldn’t be me; instead I was something (my stammer) that I hated. Why would anybody want me if I didn’t want me?

Please read part 2 and 3...

2. Somebody I know - The turning point?

For all my life I have felt great comfort being with my family and I was given the freedom to explore and develop my own interests. It was through this freedom and these interests that I found ways to express myself outside of my stammer (e.g. as I was growing up school work became my means to express my mind). In particular, Science gave me a way to understand the confusing world around me. Importantly it gave me answers to where I had come from and who I am. Also, Shakespeare, in his astonishing use of language to verbalise the inner emotions of his characters, taught me that words and voices could contain the ideas of the mind. Maybe, just maybe this applied to me; the gap between the mountains perhaps wasn’t that great.

Then after I completed my Masters course I had a nervous breakdown. It simply emptied me out; like a water balloon thrown against a wall, I burst and leaked depression everywhere. It took me two years to patch the balloon together and only after this time did I dare to fill it with emotion again. I learnt to never fill it to bursting again.

In many ways going through a breakdown teaches you the depth of your determination and fortitude; choosing to move through the howling storm of depression and finally to emerge from the other side wipes the blackboard clean but still with the former words faintly visible. The depression is still there but it is less intense; you can write over the faint words with new understanding while always referring to what you have been through.

Please read part 1 and 3...

3. Somebody I know - learning to live alongside difficulties

Possible steps to a solution

One of the main lessons I learnt from my breakdown was acceptance of the many challenges of my life. If I could meet the challenge of severe depression then I can overcome anything! So, I decided to take on the challenge of scientific research, which was something I had wanted to do and a goal that had survived my breakdown. I applied for research assistant jobs and to my surprise I was offered one in Oxford. I did say I liked challenges! I moved to Oxford on my own and I was successful as a research assistant. I gained a huge amount of confidence. After 3 years I was offered the chance to do a doctorate (DPhil) at Oxford University. Of course I said yes! I like a challenge!

During this time I attended a speech course with speech therapist Dr David Ward. He taught me a technique called “the slide”. I have difficulty moving from the first sound of a word (e.g. “f” in forty) to the vowel sound (e.g. “f” to the “o” sound in forty). I would say the “f” sound but get stuck in the transition to the “o” (e.g. “fffffffffff…ffffffffff…”). The slide is designed to ease the transition (e.g. “fooooooorty”). In essence it is deliberately stammering but in a controlled manner. When I used it I could get past the block and link up with the rest of the sentence I had in my mind. Then it hit me like a cold shower that becomes warm: for the first time in my life I could hear my voice!!! I could recognise my mind within my voice! I could be me! This had a profound impact. The explosion of stammering blocks no longer deafened me to myself. When I stammer now I have a better perception of the fluent parts of my speech. I can hear me and not just the stammer.

During my DPhil I felt the pressure and expectation and worked very hard on my project and as a result fell into depression again. I went to the University counselling service where I met a brilliant therapist, Ruth, who introduced me to Cognitive Behavioural Therapy (CBT) and the philosopher Martin Heidegger and his book “Being and Time”. In particular, Heidegger’s idea of thrownness: we are thrown into the world in a particular state but we are not to blame for this state; we did not choose whether we are male or female, have two eyes or have a stammer… Hang on, did you say I’m not to blame for my stammer?! It was a revelation! I wasn’t to blame for my stammer! This had a huge impact!

Another idea of Heidegger that complemented this was his notion that the process of being thrown into the world had a special type of momentum. Although our specific thrownness is fixed we have the potential to use the “tools” of thrownness (the structure and varied function of our body) to do a huge array of things; and we can choose how to use the tools. We live in a world where there is always something left to do.

I then read Kant’s “Critique of Pure Reason”. In it Kant develops the idea that how we view the world determines what we see. We impose a structure onto the world in the way we think about the world. This gives us great power in determining the meaning of our world.

I could bring these various strands together to weave self-compassion and acceptance into my life. I could hear my voice, I wasn’t to blame for my stammer, I always had something left to do in my life and I could interpret the world how I wished. This led me to conclude that I could be my voice, there was no reason to hate myself for something I wasn’t to blame for and there was no need to be dragged around by my stammer or depression anymore; I could take control in how I reacted to difficulties.

The two mountains have been brought closer together.

Parkinson’s disease

During the last two years of my DPhil I was unknowingly suffering the onset of Parkinson’s disease. Again, through determination and fortitude (and the invaluable support of my family) I managed to finish my DPhil despite suffering from Parkinson’s (not many people who graduate from Oxford can say that!). When the Parkinson’s diagnosis came I was grateful to my stammer and depression for teaching me how to cope with a chronic, incurable disease; unknown to me, I had been in training all my life! Thanks to my equally brilliant current therapist Angela I also found space for me within Parkinson’s like I found space within my stammer and depression.

I now see the immense value of the process of life. It isn’t about the goals we have set ourselves: it’s about how we live our life. Achieving something teaches me what I already know already; the process teaches me what I didn't know. This is possible because there is always something left to do in this life...


Please read part 1 and 2...

Losing what you never had

There was once a calmness in my body, a stillness I didn’t even realise was there; I saw through it like it was a transparent plastic sheet wrapped around me. That is what Parkinson’s takes away. It rips that sheet from you and exposes you to the awareness of what can be lost only after you have lost it.

Parkinson’s compels you to mourn something you didn’t know you had. You can’t hold it one last time and say goodbye; it’s like your wife divorcing you when you didn’t even realise you were married. Mourning such a loss can feel very strange!